Ouch, I am new to the ICD club

Hi all!
About 2-ish months ago I suffered a "cardiac event." Luckily for me, my husband rolled over in bed to make fun of me for making a weird sound. He saw my eyes rolled back in my head and noticed I wasn't breathing. He immediately pulled me onto the floor and started CPR while calling 911. He got me breathing, and luckily I live really close to an excellent heart center. Doctors installed a defibrillator, but we still do not know what caused my ventricular tachycardia. I am 43 years old, vegan, my heart looks squeaky clean, and I have never had a single health complication in my life. This has all been really hard for me. I swing violently from being thrilled to be alive to super frustrated and depressed.

But why does it still physically hurt so bad? I feel like I was making great progress and almost back to my new normal. Then this week the defibrillatior area started to be incredibly sore, and I keep getting sharp twinges at the incision site, and what feels like weird throbs in the lower middle of my chest. Finding a comfortable sleep position is nearly impossible. I feel like when I lay on my back, the ICD pushes against my collar bone. I swear this thing can move and it terrifies me. I am not good at not being ok!

Is this normal?

Does this stop soon?


Ouch - you deserve better

by Gemita - 2023-03-15 06:35:20

Starlight, first of all, I am really sorry you experienced Ventricular Tachycardia at night that led to your immediate need for an ICD.  I have non sustained Ventricular Tachycardia episodes and they can be difficult enough to cope with sometimes, so I cannot imagine surviving a sustained Ventricular Tachycardia episode and I am glad you now have the protection of your ICD.   

It is strange that you were making such progress and then you noticed a deterioration in your symptoms.  It usually starts by hurting and then gets better, not the reverse.  You say the area hurts and feels sore and this is clearly a new symptom since you were feeling so much better. 

Personally, I would get your ICD and wound area checked as quickly as possible to make sure no infection is present or to check whether your ICD has moved out of position?  The sharp twinges (I refer to them as electric shock like sensations) sound nerve related to me and these can be present for a couple of months for some of us following implant.  I had these sensations for over 3 months along with pressure type pain across my collarbone (due to lead trauma to my Subclavian vein).

You say the area has started to be incredibly sore.  I presume you mean read and inflammed in appearance.  Has the area become swollen?  Is the wound still closed.  Have you noticed any discharge coming from the wound?  An infection if present would be serious and you would need to be seen in ER/A&E quickly for them to identify the bacteria present and to give you the appropriate antibiotic.  My advice is to contact your doctor quickly for some urgent checks, followed by a trip to ER if this is indicated.

On the other hand, you ask:   Is this normal?  Does this stop soon?  

Pain following Pacemaker/ICD implant can be very normal and widespread for so many of us and may last in excess of the average expected healing period (say up to 3 months). (See our Pacemaker Club Survey link below).  So yes it can be normal and yes it does get better for “most” of us, providing no infection, inflammation, movement of device, trauma to a vein, or any other complication has occurred which is why I urge you to see a doctor.  I hope for the very best for you and welcome to the Pacemaker Club.


So sorry for you

by Lavender - 2023-03-15 10:01:33

Of course you're trying to cope. You felt healthy and strong before this happened. No idea of the insidious hidden danger lurking inside. 

My cousin died in her sleep. Everyone thought she was fine. I always thought this could've happened to me, had my heart electrical problem not surfaced.  My fainting led me to a pacemaker.  I was resentful getting one. I felt betrayed by my body.  How näive! My body warned me that something was wrong-saving my life!

Of course there was pain of healing and mental acceptance trouble in the early months after the pacemaker. I felt broken. I was fearful and discouraged. I developed agoraphobia. 

A friend is a psychologist and she recommended that I learn to self hypnotize and meditate daily. She suggested listening on YouTube to Michael Sealey. Just go to YouTube and search his name for a variety of meditations. It helped me train myself to relax. Prayer was paramount to my adjustment. Being close to nature by going outside helped tremendously. Even sitting back and watching cloud formations morph helped me to understand there is a God out there who loves me and is watching over. I am safe. 

I forced myself to drive alone and shop again. I am fine now but it was seven months post surgery until I felt more confident. 

Be courageous. Seek help from professionals when pain is too much. Be good to yourself. It won't always be this way. Your device is there for your protection. Your sneaky heart trouble has been discovered! Your husband is your hero. My boyfriend revived me!

pain and healing

by Tracey_E - 2023-03-15 10:06:19

As you get back to activity, sometimes we get sore from moving more because things aren't fully healed and it hasn't been long enough for scar tissue to build up yet. However, as Gemita said, I would ask to be checked for signs of infection. Any new pain or significant changes should be checked.

Eating right keeps the arteries clear. Exercising keeps the heart muscle strong. There is usually nothing we can do to prevent electrical issues and it's unusual to know what caused it. Many of us here have perfectly healthy hearts other than our wonky electrical systems. Have they ruled out genetics? 

Thank you!

by by-starlight - 2023-03-16 02:42:47

Thank you all for your kind words and support! It is really great to have a resource like this, and I am so glad I stumbled upon it googling about my new situation! I appreciate all your insight and tips.

Today was a better day. I am a bit busty too, and I am starting to think maybe I jiggled a bit in the wrong direction. It is the second time I believe I have done that, and it takes days to bounce back. I keep feeling like if I was a guy or even just had smaller boobs, this would be easier. My boobs normally want to hit me in the face when I lay down, so of course it could bother the area, right?!

I don't think it is infected. The outside of me still looks as though it is healing normally, but the inside seems to hurt more than it did a week ago. 

I have a dr appt in less than a week. I am making a long list of questions to harass them with!

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